The SIGNS School and Film Projects Dr Sarah Barrett, Wales Autism Research Centre, Cardiff University My name is Sarah Barrett, I have two brothers with autism which is what inspired me to get involved with autism research. I completed my PhD at the Wales Autism Research Centre with Professor Sue Leekam, and we are now working together on the SIGNS Schools and Film projects, which I will talk about today.

Outline Background SIGNS The Birthday Party Learning with Autism Work with the Welsh government SIGNS The Birthday Party Learning with Autism SIGNS Schools Project Wales Latvia I will begin by discussing the background to the project, specifically our work with the Welsh government. I’ll then discuss the SIGNS of autism concept that my colleagues created. I’ll then explain how these SIGNS are implemented in the Birthday Party film and Learning with Autism programme. I’ll then explain the SIGNS Schools Project which started off in Welsh schools and has now opened to wider recruitment in the UK, and is also being carried out in Latvia.

Background Research Policy and practice Welsh Government: Strategic Action Plan for Autism Policy and practice Research As part of the Welsh government’s Strategic Action Plan for autism in Wales, they set up the Wales Autism Research Centre at Cardiff University in 2010, with funding from the government and several charities and Prof. Sue Leekam as the director. One of the main aims of WARC was to improve the relationship between research and policy and practice.

Background Priorities for services Raising awareness, information, advice and training Assessment, diagnosis and support Addressing support needs Education and employment These are four priorities for services identified in the Action Plan

Background Priorities for services Raising awareness, information, advice and training Assessment, diagnosis and support Addressing support needs Education and employment WARC has focused on the first two, raising awareness etc and assessment diagnosis and support

Background Assessment, diagnosis and support Diagnostic Interview for Social and Communication Disorders In collaboration with Lorna Wing, Judith Gould and others, Sue worked to develop a diagnostic tool, the diagnostic interview for social and communication disorders or DISCO, which is a useful tool as it encompasses the whole spectrum, asking about the developmental history of the child and about related difficulties. However it is a very long tool, and takes at least 3 hours to administer. So WARC and the government wanted to try and develop an abbreviated version.

Background So Sue and colleagues worked together first to assess the usefulness of the DISCO items for the new DSM-5 criteria, then they identified items that could form an abbreviated version of the DISCO, which only takes about an hour or an hour and a half. This could be used as part of the diagnostic process and is being used in Wales currently. They then went beyond that and identified 14 signposting items that identify autistic individuals

SIGNS Raising awareness, information, advice and training SIGNS posters for doctors’ surgeries, hospitals, schools With Johanna Manikiza National Development Team, Welsh Local Government Association These 14 items became the basis of SIGNS, along with some items from our national guidelines, and fit into the other priority area for services: raising awareness, information, advice and training. The SIGNS relate to social interaction, imagination, non-verbal communication, restricted and repetitive behaviours and sensory symptoms. These were developed into posters for pre-schoolers, children and young adolescents, and older adolescents and adults, and given to doctors, hospitals and schools to help them identify the signs of autism.

SIGNS These are the full posters for each age group…

The Birthday Party SIGNS Film Project – The Birthday Party For front line professionals With Johanna Manikiza (Welsh Local Government Association) and Judith Gould (Lorna Wing Centre) and Sarah Carrington (Aston University) Available in English, Welsh and Latvian Trailer: https://vimeo.com/217991680 We also used these signs as a basis for a training film for professionals who may not be familiar with autism – intended to be an introduction to subtle signs of autism, and how differently autism may look in different children. Based on a Birthday Party as a possible real life situation that can demonstrate many of the difficulties autistic children may face. However feedback from parents and professionals was that it should be accompanied by training notes, and made more widely available, so it is now freely available on the internet. It is available in English and Welsh, and also in Latvian. Hoping to translate it into other languages.

Learning with Autism programme The SIGNS are also used in the Welsh Government’s Learning with Autism programme – an online set of materials designed to raise awareness of ASD in school staff, including how to recognise possible signs of autism. This includes a guide featuring one of the SIGNS posters.

The SIGNS Schools Project As the SIGNS have been used in the Birthday Party film and the Learning with Autism project, it is important to evaluate whether or not they are actually useful signs that could be used for signposting one day.

The SIGNS Schools Project So we took the signs and turned them into two questionnaires – one based on the 14 items from the paper I described earlier, which we called SIGNS, and one from the additional items from our national guidelines, which we called NICE. Two questionnaires because the SIGNS on the posters came from two different sources, so we separated them based on where the items came from (diagnostic interview, or national guidelines).

The SIGNS Schools Project Are the new signposting questionnaires reliable and valid? Do they distinguish autistic from non-autistic children? Evaluation of the Learning with Autism programme We are interested in whether or not these questionnaires are reliable and valid – so do they measure the signs of autism, and do all the items in each questionnaire measure the same thing? We are also interested in whether or not they distinguish autistic from non-autistic children – this is the crucial point. If they do not do this, then they are not useful signposting tools (although they may still be useful in research). We are also including an evaluation of LWA by school staff as part of the project.

The SIGNS Schools Project Wales Parents and teachers of 165 children Recruited from: Caerphilly primary schools that have completed Learning With Autism programme training WARC’s research recruitment register Attendees of WLGA events In Wales we aim to recruit parents and teachers of children – initially we recruit from the Special Educational Needs Register. Chose to focus on SEN initially to reduce burden on teachers who might have to fill out questionnaires about more than one child, and also so we can compare the questionnaires in children with autism and children with another special needs, which is important for a potential signposting questionnaire. However we have found that not many parents have responded from SEN register so in some schools we have opened up beyond the SEN register. We began working mostly with Caerphilly primary schools that have completed LWA training, as this part of Wales has been very supportive of the LWA programme

The SIGNS Schools Project Materials SIGNS Questionnaire NICE Questionnaire Strengths and Difficulties Questionnaire Autism-Spectrum Quotient (10 items) Demographics/Background Procedure Parents complete questionnaire Teachers complete questionnaire Learning With Autism Evaluation The study comprises four questionnaires – the two questionnaires based on SIGNS and national guidelines that I explained earlier, and two existing questionnaire that have shown to be reliable and valid to compare with the new questionnaires. Once parents have completed questionnaire, if they give permission then the teacher will fill out the same questionnaire about the same child. Teachers are then given the opportunity to complete a short evaluation survey about the LWA, bearing that child in mind and reflecting on whether or not the LWA led them to adapt their practice and support for that child (In case anyone asks… Strength and Difficulties covers a range of potential issues and developmental abilities such as those relating to prosocial behaviour, communication, aggression and emotional problems, so doesn’t just measure ASD symptoms. AQ-10 on the other hand specifically measures ASD symptoms, and is based on a larger questionnaire and reduced down to most discriminating items so conceptually similar to SIGNS except that it is not based on a diagnostic tool. Also asked parents background questions, such as other diagnoses, info about their siblings and parents’ work and education.)

SDQ (Total Difficulties) Pilot Data 28 participants from first wave of data collection Aged 4-11 years 20 children with ASD, 5 children with other SEN and 3 typically developing children   SDQ (Total Difficulties) AQ-10 SIGNS NICE Mean (SD) 18.32 (6.19) 2.89 (.80) 2.46 (.81) 2.63 (.73) Range 4-29 1.3-4.0 1.0-3.64 1.19-3.64 Reliability (α) .71 .87 .92 .96 Wanted to check whether or not the questionnaire was working well and there were no problems so looked out our first wave of data collection – our pilot data. This comprised 28 children from two schools, and our own recruitment lists, not enough teacher data to analyse (N=6). Aged 4-11 years – only wanted to recruit from 5 but as these children were in a school environment we left them in the sample. 20 children with ASD, 5 children with other SEN and 3 TD children. The reliability of questionnaires look good and the questionnaires measured on a similar scale have similar means and ranges

Pilot Data rs=.81, p<.001 rs=.87, p<.001 rs=.82, p<.001 All the questionnaires correlated strongly with each other suggesting they measure the same thing, I will show the correlations between SIGNS – our questionnaire of interest – and SDQ [CLICK], AQ-10 [CLICK], and NICE [CLICK]

Pilot Data When comparing scores on the different questionnaires, autistic children are scored as higher than non-autistic children – this is what we’d expect to see if the questionnaire is working well. When we have more data we’d like to split the non-autistic groups so that we can compare ASD to other SENs. t(1,10.02)=18.4, p=.002 Z=-3.24, p=.001; Z=-3.05, p=.001; Z=-3.07, p=.001

The SIGNS Schools Project Currently conducting the study in Wales Expanded to schools outside Caerphilly/LWA Cardiff, Torfaen, Newport Also widened general recruitment Starting the project in Latvia Do the questionnaires measure the signs of autism across language and culture? Overall happy with pilot data, so continued with data collection. However due to slow recruitment we have expanded outside of Caerphilly but still in South Wales area. Also widened general recruitment. Still targeting schools though as parent/teacher comparisons important. We are also running the study in Latvia. We are interested in whether or not the questionnaires, if they are reliable and valid, measure the signs of autism across language and culture, and colleagues in Latvia approached us about collaboration. It may be particularly useful for children with subtle signs that often get missed. The questionnaire is not a diagnostic tool, but it may help signpost children who need support in schools before and after diagnosis by making schools more aware of the signs, and then combining the awareness with adapting their practice and the school environment.

Thank you! Wales Latvia Research Team University of Latvia Cardiff University: Prof. Sue Leekam, Dr Catherine Jones and Prof. Dale Hay Aston University: Dr Sarah Carrington Educational Psychology Cardiff University: Dr Kyla Honey and Andrea Higgins Caerphilly Council: Dr Laurie Davies and Lois Brown Welsh Government and Education Welsh Government: Jo Manikiza and Gaby Worgan Caerphilly Council: Jacqui Elias Participants South Wales schools Research Recruitment Register Welsh Local Government Association mailing list Latvia University of Latvia Dr.psych. Ieva Bite, Marija Legzdiņa and Kristīne Āriņa Autism Association of Latvia Līga Bērziņa Prof. Sandra Serbe British Psychological Society Postdoctoral Study Visit Scheme